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February 3, 2009

Change of Face: Should Government Pay for Lipoatrophy Treatment?

by David Evans

The Centers for Medicare and Medicaid Services is accepting public comments until February 16 to help it decide whether to cover treatments for facial wasting. Sharing your story, or the story of a loved one, could help secure coverage of these therapies for HIV-positive people who need them.

Study after study shows that HIV-related facial fat loss has a profound effect on a person’s life, ranging from isolation and depression to HIV treatment adherence problems. While the condition, called lipoatrophy, also affects the arms, legs and buttocks, it’s facial wasting that is often most visible and, as a result, the most stigmatizing. “Facial wasting is like the scarlet letter of HIV. It takes away your anonymity and declares to the world that you’re HIV positive,” says Nelson Vergel, a Houston AIDS activist.

The face is also the part of the body that’s easiest to restore with temporary or permanent filling agents, at least for those with the cash or credit to pay several thousand dollars to a trained plastic surgeon or dermatologist. Until now, the government has considered HIV-related facial reconstruction a cosmetic procedure and therefore not coverable by Medicaid, Medicare or private health insurance. All of that could change very soon—with your help.

Only rarely does the average person living with HIV receive an open invitation to help the federal government shape its health policy. Between now and February 16, the Centers for Medicare and Medicaid Services (CMS), a branch of the federal Department of Health and Human Services, is accepting public comment on reconstructive treatments for HIV-related facial wasting. AIDS activists who’ve long advocated for the government and private insurance to cover such treatments say that a groundswell of comments from individuals and organizations could finally make this hope a reality. Of course, it will be critical that such comments make the strongest case for coverage of this vital treatment. Following is a primer on the causes of facial wasting, the impact it has on people’s well-being, and the rational for ensuring that everyone with the condition has access to reconstructive treatment.

Causes and Conditions

When doctors first noticed that people with HIV were losing body and facial fat, they thought it was due to the wasting syndrome that was so common in the late 1980s and early 1990s. Then, because protease inhibitors had recently been introduced, experts feared they could be the cause. Ultimately, numerous studies proved that three of the older drugs were the culprits. The worst offender turned out to be Zerit (stavudine), followed by Retrovir (zidovudine). If a person stopped taking the offending drug, the fat loss usually halted, but the fat almost never returned.

Vergel, who has led the charge for better access to treatments for facial wasting and runs a web forum on the topic, says people contact him all the time and tell him they are terrified to start HIV treatment for fear of facial wasting and ask him how to avoid it. “There is enough data to show a huge impact on quality of life, depression and anxiety, suicidal thoughts and [poorer] adherence [to antiretroviral medication] among people with facial wasting,” Vergel says.

Vergel believes that this research demonstrates that treating facial wasting is medically necessary—the standard that must be met if it is to be covered by both government and private health insurance.

The only treatments approved by the U.S. Food and Drug Administration (FDA) for HIV-related fat loss are injectable artificial fillers that help collagen form under the skin, and these are approved only for the face. Both fillers act in a similar fashion and are considered semi-permanent. It usually takes several courses of treatment to restore the face to normal proportions, and people often need to repeat the treatment within a couple of years. Each course of treatment can run in excess of $5,000 when the cost of the fillers is added to the cost that most trained practitioners charge for the consultations and injection procedures.

The CMS process of collecting public comment will help the government determine whether facial wasting treatment meets the medical necessity threshold. “It’s critical that people make the point that facial wasting can be totally debilitating and that facial reconstruction is just that, reconstruction of something that the [HIV] drugs took away. This is not cosmetic. This is not about vanity,” Vergel says.

Vergel also makes that point that private health insurance companies usually follow whatever course the government takes with Medicare and Medicaid. He says that even people with private insurance should send in comments.

To share your story, advocate for a loved one or make a declaration on behalf of your organization, visit the CMS web site here and click on the orange “Comment” button in the title. Vergel says that comments should make the case that the treatment is reconstructive, rather than cosmetic, and elaborate on the mental and physical toll that facial wasting can have on a person.

(Note: The POZ team reviews all comments before they are posted. Please do not include either ":" or "@" in your comment. The opinions expressed by people providing comments are theirs alone. They do not necessarily reflect the opinions of Smart + Strong, which is not responsible for the accuracy of any of the information supplied by people providing comments.)

Sally, , 2009-02-17 10:32:02
Also it's important to review the procedures and materials that are being used. I have a friend with facial wasting that is receiving treatment for a while but I just can't see any improvement, or just a little. He says that his insurance pays for the chemicals but the doctor, which in my opinion is a crock because he is not injecting the amount necessary to make real difference. I know other people that have it done in other countries and they look just perfect once again.

Sandy, , 2009-02-16 15:31:54
No experience with facial wasting at this time. Although, I do believe any thing the government can do to help with a person's self esteem, or a battle with depression can extend a person's life. Even people who have not experienced facial wasting know how it feels to look someone in the face and see discuss when they know a person is HIV positive. I can only imagine the horror of being wispered about at work, family reunions or even around friends. Yes I agree with added care.

catherine, , 2009-02-16 15:06:04
I've been positive since 1988. Facial wasting has led some to believe I had Cancer or an eating disorder. I've been refused jobs because I appear unwell. Having lipodystrophy and lipoatrophy wtih severe facial wasting is an HIV Declaration Billboard. It has caused me great depression, severe anxiety and a hopelessness bad enough that I have at times stopped my medications. My quality of life is half what it was before wasting. Facial reconstruction could return me to a life worth living.

WB, New York, 2009-02-16 10:34:19
I have participated in a drug trial for Radiesse. It made a HUGE difference in my facial appearance and my self-esteem. But the effects wear off. Now people comment that tired I look, that I have lost weight (though I've gained), and act concerned about my health. I'm quite healthy, have a managerial job, but feel that my appearance affects how others react to me, and my appearance bothers me deeply. But I can't afford additional treatments without assistance from health insurance.

Marcos, São Paulo-Brazil, 2009-02-16 10:01:45
The good side of assistencialist governmentment like ours in Brazil is that this service of facial reconstruction is available in public health service because Government understand that its cost worths in comparison with the costs with loss in quality of life and with the health problems that people who suffer with that may bring about.

Raymond Hilerio, , 2009-02-15 00:33:25
No one told me that this is available. If I had done it way back I would not look like grimm reaper.

Mark, , 2009-02-14 17:52:01
it's about time to get rid of the AIDS FACE that some people enjoy seeing just to discrinate others - those signs are also the ones responsible for people be afraid of get a simple HIV TEST and needs to be ended. The government also should pay for FULL dental treatment as well and stop this discrimantory policy that kills more than the disease itself.

Henry Gladden, lowell, 2009-02-12 23:21:42
I gets frustrating because I don't know what to say. I tell them that it's just my metabolism I always looked this way, I just have a high cheek bone structure and anything else I can think of to keep them from thinking it's the hiv. I am getting mentally and physically tired, it hurts so much. I even feel that when a total stranger looks at me that, that person is probably wondering what is wrong with me. I really hope the government would really consider it.

Henry Gladden, Lowell, Ma, 2009-02-12 23:17:09
Hello my name is henry gladden and I have been hiv+ since 17, I am now 31. I have noticed 10 years ago just how drastic my face has changed ove the decade. I have lost a lot of my cheeks. I have not seen my family for about 7 years because the last time I visit they made comments about how sick I looked and them knowing that I am gay did'nt make it any easier to divert there thoughts otherwise. At work people make comments too about how sick I look.

lewis, LA, 2009-02-12 21:08:29
I too have experienced facial wasting. I was able to get treated through the Sculptra Patient Access (through the makers of the filler). You can get a form online at sculptra. If your income falls below a certain ammount, you can get the filler for free. It will be sent to a doctor who participates in the program. You will still have to pay for the injection itself, but you can shop around and usually find an affordable rate. It made a huge difference pyysically & mentally.

Ron Gadaire, Brimfield, 2009-02-12 18:18:11
I started with facial wasting 4 years ago and it is dramatic. I am the image of a skeleton. I withdrew socially, lost a relationship, friends and a life. I saw a psych. and started on antidepressants which made me anxious and did nothing for the wasting obviously. I qualified for a program by a Pharmaceutical company but the doctor stopped treatments because Medicare would not pay the small co pay. Thanks for the support of my government who I paid taxes to for 25 years.

tommy j. phillips, goldenvalley, 2009-02-12 12:30:07
Yes i think it should be covered.
My arms, legs, butt are almost gone, & don't forget about my feet, i can hardly walk sometimes.
I haven't shaved for 2 or so years, because i don't like what i see in the mirror everyday ! I'm tired of being a hermit.
Lipoatrophy has stopped me from seeing friends & family.
To see a full face again would boost my spirits dramitically.
We all want to look normal,
don't we ?

michael, Barnstable MA, 2009-02-12 09:31:32
this is very important to me and many others.Most often i find myself not leaving my bedroom never mind going outside.Please help us to appear healthy therefore uplifting our spirits and helping to extend our precious lives an not scaring the lives out of our loved ones.

Brady J. Sanabria, New York, 2009-02-12 00:14:14
Help long overdue, all insurances should cover lipoatrophy treatments! The nightmare of the medication side effects are devastating enough without having the public treat people like their lepers, which still happens today. Charity starts at home, America sends billions to the countries that hate us, it's time to take care of our own now.